[Ali B]

Hello

I haven't been reading or posting on here for some months. I return, 6 months after the injury, still experiencing symptoms which affect my day to day and quality of life.

My main symptoms are interrupted sleep, tiredness, brain fogginess, inability to focus for long periods, light phobic, noise phobic, headaches.

I was wondering mostly though, if any of you are the main carer of young children. Mine are 4 and nearly 6, so are at pre-school and school some of the time. However, my role as their mum is still being seriously affected by my PCS.

Some days particularly, I find the following:

• A normal day tires me more
• My mood changes more sharply and unpredictably
• I'm intollerant of noise that children and toys make

Tonight my son inadvertently shone his night reading torch into the eye nearerest where I had my injury. It made me jump so much and I felt overwhelmed. I actually burst into tears.

My kids know what happened and about my symptoms. I keep them informed but don't want to make it dominate them or over worry them.

Have you had to change things and if so what do you do? Or how do you view the affect your symptoms have, so that you remain positive about your role as parent or carer?

Thanks for reading.

[wtrpk]

I am a mom of 3 children..one in college...7th grade and 4th. boys are the younger 2. I missed every baseball game last season and every basketball game until tonight. (I hit my head 6months ago too).

Kids understand a lot....maybe not the preschooler..but just keep up the rest when they are in school. Don't worry about the house being messy or if you have to order dinner in....just rest. Harder said than done...but I finally gave in...my house is not the way it used to be but one day it will look the way i want it to. And....they are happy to eat pizza more often than I would like them to...so I gave in there too.

Earplugs help muffle some of the sharper sounds...try that.

Think of games that maybe you can separate them for...or choose quiet things....like color a nice picture to mail to grandma or something like that.

GOod luck

[Grady Lady]

Dear Ali,

Being a mom with little ones is challenging in of itself even without PCS.
I hear your struggle. Until last March, I taught preschool music and the energy level of that age exhausts the best of us.

My three are in college and honestly when they reenter, it's like having pre-schoolers home again with all the noise, the clowning around, music, all their different schedules and much needed attention.

I know this is hard but once they are out the door, Ali, you gotta REST up for there return. Forget about the house. This has been a challenge for me and you know what, my family would rather have me rested and present than a clean house. Quite frankly I like myself better too.

My nerves aren't as jumpy. I too had a time where I was startled by something falling overhead of me, missing me slightly and began crying immediately. It scared me so.

Meal time - Crock-pot meals and hearty soups cook all day -
in it goes and down I go for a refreshing nap...

Basically darlin', you are the most important one to your precious ones and you are the most important person to yourself, remember what the flight attendants say before take off - secure your oxygen mask first before your children.

Your oxygen mask is REST...

I KNOW this is not easy,
all I know is if I breathe first,
I am more the mom
I hope to be.

Peace
Grady Lady

[BeccaP]

Hi Ali,

I am mom struggling through this as well. My children are 12, 8 and 5. It's been about 18 months since my injury. I've had to change so much. I'm only starting to be able to stand being in group/social settings (even so, I still use earplugs a lot), so other than at home I just haven't been able to go to their events and they've had to miss a lot as well. I pulled them out of a lot of their activities because I couldn't handle things. I know it's been hard on them but they've been surprisingly resilient and even learned to be a bit more responsible because I haven't been able to do as much.

During this recovery period my house has never been messier and dustier. I've learned to let the non-essential things go. It's been hard to me to be around them a lot (because of the noise and commotion), especially the 5 year old who has been exceptionally loud from the day he was born. I try to make up for it with very affectionate and short cuddle times and lots of smiles when I am with them (yes, I do fake it quite a bit). I am very blessed to have a wonderful husband who has held things together and done his responsibilities and many of mine.

For a long time I felt like a crazy woman, It was so hard to control my emotions. It has improved with time but is still a struggle. I've learned to give myself time outs and walk out of a situation before I lose it. My kids understand basically what happened but it is still hard for them. I don't expect them to really understand when most adult aren't able.

I still hope to improve over time but the rate of recovery has slowed quite a bit. I am trying to work with where I am now and not expect myself to be what I was before. Simplify. I am trying to structure things in a way that I can succeed in small ways and keep up with the basic stuff. Letting go of prior expectations has been a huge help, being realistic about what I can handle/do right now, always hoping for more in the future.

I hope this is helpful. This is such a hard thing to deal with, especially when you are worried about the impact it is having on your children. There isn't anything I care more about doing well and it is really hard to be so limited. The good news is that they really are handling it amazingly well, and I know we will all make it through this difficult time. You will too, hang in there!

Best Wishes,

Becca

[Ali B]

Thank you for your posts. Reading them has given me much to ponder and I feel very supported.

I know deep down that this isn't going to go away just like that. I think I'm at a cross roads regarding how I handle things and the choices I make.

Sometimes the PCS seems to be getting better, then I notice a gradual decline. I have lots of love around me but it's not well understood, is it, so it feels like a bit of a lonely condition to have sometimes. My husband is great, but he has to go away a lot with work. I'm pretty bad right now and really lost it earlier, feeling dizzy, exhausted and panicky, and ended up shouting at the kids. My husband's on a 10 day trip to Asia and my mum was tied up so couldn't come an help for a few days as she sometimes does. I think it's pushed me beyond what I can cope with.

I hit my head while my house was being remodelled, on site as it happens, and we're barely straight from the building work and resulting chaos. I dream of the day the house will be fit enough to be able to cut corners. My 5 year old has complex respiratory diseases and is allergic to house dust too so I feel I have to keep on top of the cleaning in case it irritates her. She's getting better gradually though and generally we're enjoying less stress in our lives than we have for year,s on that level at least.

But this PCS is getting to me and I try to deny that most of the time.

I will continue to endeavour to make the right choices so a healthy balance for me resumes. I'm far from it at the moment, I fear.

Hope you had a good day.